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Convinced I’m in serious trouble.

User
Posted 18 Feb 2021 at 21:15

Hi all, been reading various threads and this seems a really helpful community. Looking for some reassurance.

Last few months ejaculate has decreased to barely nothing and general ache and pain in prostate region led me to doctor. No major issues with peeing, stream not the racehorse I used to be but certainly not a trickle. No getting up in the night, no burning. Following GP exam 28th Jan (slightly abnormal, central depression not really there) put on Cipro to manage any possible infection and had MRI on 8th Feb. Results back over the phone on Tuesday 16th - ‘5-suspicious’. Then spoke to GP for blood results, PSA5.66-slightly elevated, but everything else ‘normal’ - calcium, liver, white cells a little low (but were two years ago), platelets ok, not diabetic, etc etc. Dr said PSA0-2.75 ‘healthy’ for my age. Have no prior measurement. Doc said he would expect any spreading cancer to show up somewhere in some of those measures.
Booked in for biopsy 9th March. Scheduled a phonecall with Consultant (Doctors name removed by moderator) tomorrow. Seems to know his stuff and has a special focus area on diagnosis of PCa.

Have learned more in the last two days than I ever wanted to. Have lost appetite, not sleeping well, feel constantly sick, have convinced myself that every pain or niggle between ribs and knees is linked to it. From various literature that correlates Pirads 5 to Gleason etc that this is mega-serious and I need to be getting affairs in order.

Have had lower back pain for years and constant groin/testicular stretches etc that I have always discounted to over-exertion, exercise etc. Now worried that these were all signals.

Anything else I could/should be doing? Anyone throw any experience on these kind of measures?

Edited by moderator 18 Feb 2021 at 22:21  | Reason: Doctors name mentioned

User
Posted 18 Feb 2021 at 23:05

Chill out, man.

I think we have had three people quite recently with pirads-5 who have just been given the all clear.

It sounds like you have some prostate problem it may be an infection. It may even be cancer, but even if it is cancer it is probably a lot more manageable than you think.

A psa of 5.6 is elevated but if your cancer had spread psa would be much higher, and dre would have been much more conclusive.

Feeling sick, not sleeping, not eating, that is all anxiety not cancer. General aches and pains are probably just that. PCa has to be quite advanced before you get any noticeable symptoms, other than peeing problems which are usually the first sign. 

So wait for the biopsy results, until you get them you can't do anything, and there is no point in worrying. When you get the results you might have cancer but you might not, if you have it has every chance of being curable. 

As for getting your affairs in order, fine everyone should make a will, but I don't think anyone will be benefitting from it soon. 

Dave

User
Posted 19 Feb 2021 at 07:27
Don't start planning your funeral just yet 😁. Even if you do have prostate cancer, and yes, you may well have, with a PSA of less than 6 the odds massively favour it being localised cancer which is an eminently treatable condition. Just wait for the diagnostic process to run its course and then you'll know. There's no point in getting stressed about it. Just wait and see.

Best wishes,

Chris

User
Posted 19 Feb 2021 at 08:27

As the other guys have said RELAX..... do not guess what the end will be justly live each day as it comes.   Your PSA is not that bad and the aches and pains could just be you stressing.   I’m the opposite.... I have every professional asking if I have paints and aches and am I ok..... I feel great...... I just have PCa.

What will be will be ..... getting all excited about it achieves nothing and be assured there is a lot that can be done.

Keep us posted :-)

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User
Posted 18 Feb 2021 at 23:05

Chill out, man.

I think we have had three people quite recently with pirads-5 who have just been given the all clear.

It sounds like you have some prostate problem it may be an infection. It may even be cancer, but even if it is cancer it is probably a lot more manageable than you think.

A psa of 5.6 is elevated but if your cancer had spread psa would be much higher, and dre would have been much more conclusive.

Feeling sick, not sleeping, not eating, that is all anxiety not cancer. General aches and pains are probably just that. PCa has to be quite advanced before you get any noticeable symptoms, other than peeing problems which are usually the first sign. 

So wait for the biopsy results, until you get them you can't do anything, and there is no point in worrying. When you get the results you might have cancer but you might not, if you have it has every chance of being curable. 

As for getting your affairs in order, fine everyone should make a will, but I don't think anyone will be benefitting from it soon. 

Dave

User
Posted 19 Feb 2021 at 07:27
Don't start planning your funeral just yet 😁. Even if you do have prostate cancer, and yes, you may well have, with a PSA of less than 6 the odds massively favour it being localised cancer which is an eminently treatable condition. Just wait for the diagnostic process to run its course and then you'll know. There's no point in getting stressed about it. Just wait and see.

Best wishes,

Chris

User
Posted 19 Feb 2021 at 08:00

Thanks, Dave. 

User
Posted 19 Feb 2021 at 08:01

Thanks for the feedback. Helpful :-)

User
Posted 19 Feb 2021 at 08:27

As the other guys have said RELAX..... do not guess what the end will be justly live each day as it comes.   Your PSA is not that bad and the aches and pains could just be you stressing.   I’m the opposite.... I have every professional asking if I have paints and aches and am I ok..... I feel great...... I just have PCa.

What will be will be ..... getting all excited about it achieves nothing and be assured there is a lot that can be done.

Keep us posted :-)

User
Posted 19 Mar 2021 at 19:35

Update - clarified MRI scan as left side TZ PZ,  T2a N0 M0, prostate volume 50cc. Finished course of cipro and relaxant. Had a week and a half to calm down and was pretty chilled until the day before the biopsy. Hardly any discomfort and all pretty good. Almost convinced myself it must have been infection.
Had transperineal biopsy 9th March. Fairly undignified affair and not pleasant. Consultant had some pretty scary looking sketches on my notes showing a zone occupying most of left side - but stupidly didnt explore that with him - was too nervous.
He started on left side, and wanted samples from right. Quite some pain so he only took a few from that side. Suggested that if they need to repeat (!) it would be advisable to be under a general. Spent a good few days with sharp pinching, but no blood in urine. Still feels tender in there and not sure if thats due to the invasion or just general. Now waiting for results - missed a call today for F2F appointment next Saturday. Dont know if F2F meeting signifies bad results - given the virus situation I would have expected just a call if all good. Maybe I’m reading too much into that as well already. The nerves are now rising again...

User
Posted 19 Mar 2021 at 20:46

Hi chippers, glad you've got back to us. You seem a lot more relaxed now. Hope all goes well tomorrow. 

Dave

User
Posted 20 Mar 2021 at 00:22
A face to face meeting doesn’t signify good or bad results - they have already told you that you most likely have cancer but that it is contained and there are no mets. The appointment will just be to confirm the details and tell you what treatment options the multi-disciplinary team think will be suitable for you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Mar 2021 at 15:45

Update - just back from meeting Urologist. As a  reminder: GP DRE 28th Jan, PSA 5.66 all other measures normal, MRI 8th Feb PIRADS 5 TZ PZ T2a N0 M0 50cc, Biopsy 9th Mar.

Results today: 5/5 cores left side, all Gl.7 (3+4), 1/1 core right side Gl.6. Doc pretty relaxed, but I obv wasnt.

Discussed robotic keyhole surgery. It was suggested that high likelihood of cure, overnight stay, 10 days catheter. Risks explained as DVT (blood thinner for a while), narrowing of new joint, rectal injury, erectile function. Could spare nerves RHS, 30% risk to LHS. Pelvic floor work can get back to normal 3-6m. Does this tie up with what others on the group are hearing/have experienced? 4-8week wait once my decision made.

Being referred to rad therapy group for discussion on their treatment options.

Got my toolkit - ‘bedtime reading’ was right, because not much else happening in that dept at mo. Hopefully that’s post-biopsy tenderness rather than anything more sinister.

Thanks for being here everyone - it really helps. Feeling ok I guess, obviously the outcome that I have PCa had already been subconsciously processed.

User
Posted 26 Mar 2021 at 16:15
An entirely expected result, and G3+4 certainly isn’t a disaster. Do talk to the oncologist before you come to any decision. If you have any questions about the HT/RT route I’ll be happy to answer them; that’s the treatment I had and it wasn’t too bad at all.

Best wishes,

Chris

User
Posted 26 Mar 2021 at 16:50

Thx, Cheshire Chris.

User
Posted 01 Apr 2021 at 22:10

Update. Have met with an oncologist and one of the two surgeons for my region:

option 1: robotic surgery. Consultant meeting: Gl.7(3+4) fairly good outlook. RHS could spare nerves, LHS 30% chance of damage. Risks included DVT, rectal injury, narrowing of new urethra joint, ED. Pelvic floor exercises could bring continence back to normal 3-6m. RT options beyond. 
Commented that RT has 70-80% cure.

Surgeon 1 (meeting) has done 63 (‘18-‘19), Surgeon 2 has done 251 (‘17-‘19). Less activity during ‘20, obviously. These don't sound like ‘top of their game’ numbers to me. Found BAUS to be next to pointless - doesn’t report anything useful in terms of outcomes, unless I am doing something wrong?

option 2: brachy. Onco meeting: 50cc gland is probably ok but wont know until initial planning session. Side effects swelling, urination difficulty for 3m minimum, supported by Tams. 1/3rd men ED, some can be rectified. Success rate 85-90%, same as surgery. If unsuccessful HT option beyond but surgery too difficult. Commented that RP surgery leads to 20-30% needing RT. 

Received some of my notes by post AFTER meetings:

MRI: PSAD 0.11. Bilateral inguinal hernia noted - first I’ve heard of it. 600ml bladder retention reported - sounds almost full!
BIO: 9 cores, max tumour length 14mm LHS (Gl. 3+4), 2.5mm RHS (only one core Gl.3+3)

I’ve kind of hit that (no doubt common) information overload point. Really losing focus and clarity and worrying about indecisiveness due to all the different info sources.
Why is there no single point if contact addressing your case and working through this with you?

( Was thinking that a database of cases, populated by patients with their profile characteristics, experienced effects, time periods, etc would be a really valuable resource to rationalise where you are against where they were, and how it went for them - rather than trying to interpret and mentally map each thread contributor. Would take a few years to grow but would be great... )

User
Posted 01 Apr 2021 at 22:49
You can find something like that by joining YANANow but whatever online forum or data collection you look at, you will have the same problem - it isn't going to tell you what your outcome is going to be, only what happened to other people.

The estimate that 30% of men who have RP go on to have a recurrence is borne out by research; it is less likely for a man with a T1 suitable for full nerve sparing and more likely for a man like you who is suitable only for partial nerve sparing.

All you can do really is determine which treatment seems to give you the best chance of remission and then decide whether you can live with the known and potential side effects. If you can't face the side effects, go for the next best treatment whose risks you can live with.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Apr 2021 at 05:23
You will be aware of the generalizations that are made about treatments in terms of success and side effects. I feel you should concentrate on this and what the Consultants told you about your particular case and then make your decision. Even if there was some sort of register for men showing all the slight variables, (a mammoth task), I think it would add to your dilemma. Also, since the time many of these men have had their treatment, there have been improvements made both in treatments and the way these are administered. There have also been improvements in the combination of scans and biopsies which aid diagnosis and treatment planning and adoption. So again, treatment given today is likely to give improved results.
Barry
User
Posted 03 Apr 2021 at 22:05

Hi Chippers, When I read your first post it seemed you'd hit overload.  There are some fundamentals and white blood cells aren't one, but when you first find out it's all new.

The main factors are will it cure, will it have side effects.  The surgeon's skills can be a significant factor but it doesn't remove all risk.

For brachy you might most question if it's as good as surgery for your case.

Writing things down can clarify your thoughts for them later to form.  Although sometimes not.

What do you feel better about?  For me it was surgery no question but we're all different.  I then checked if the surgeon had done a reasonable number of operations. I wasn't looking for a Christian Barnard.   I hope that's helpful.  All the best, Peter

User
Posted 19 Jun 2021 at 12:00

Quick update. 18 days into recovery post surgery. Have put some more info into my profile.

All going pretty much ‘textbook’ I’m glad to say.

User
Posted 19 Jun 2021 at 15:08

I read your profile, looks like things are going well. Long may that continue.

Ido4

User
Posted 19 Jun 2021 at 15:26
Hi Ian, likewise. Looks like you’ve been going through thr mill. Stay strong.
 
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